Tag: bereavement

You may feel like the pain is unbearable, that the pain is going to crush you, that the pain is too much.

You may feel like your life has ended. That you do not want life to carry on.

I understand. I have been there.

My son Hugo died at the age of just 35 days. He had been born when I was 24 weeks’ pregnant, my first and so far only child.

Each one of those 35 days is so precious, but not enough.

No amount of time can ever be enough.

While your life has not ended; you continue to exist, your life as you knew it has ended. The end of innocence. The harsh realisation that bad things happen in life – and not just to other people.

Bad things happen to you, too. No one is immune.

We evolve during the course of our lives, of course. But grief changes you: suddenly, abruptly, shockingly.

Your relationships may change: some for the better, others for the worst. You are likely to discover that the old adage about seeing the best and worst of people during times of crisis is true.

Some people – even those previously closest to you – may not know how to deal with your changed relationship. The changed you. Most will want to do all they can to help you but because they do not know what to do for the best may blunder, put their foot in it, utter endless platitudes, and when tempers get frayed make you feel as though you are at fault.

The knowledge that the blunders are well-intentioned is unlikely to make you feel any better. It may feel like constant salt in the wound.

Me and Hugo enjoying a cuddle.

So much of your pain cannot be expressed in words. What you may want most of all is someone to sit with you as you cry or stare into space. Someone to understand that you don’t know how to express your emotions. That sometimes, the power behind those emotions scares you. That you think the pain will never ever end.

But many people are uncomfortable with silence. People may want to talk at you, want to tell you about their own experiences of bereavement. Or they may want to tell you what they think you should do. They want to make you ‘better’, not realising life will never, ever be better. You may well sit their patiently waiting for them to shut up – but it is fine to ask them to stop talking, too.

People may not mention your child’s name, worried it may upset you but failing to appreciate that not mentioning them upsets you more – and after all, the worst has already happened.

People may not want to talk about your child with you, filling you with frustration. They were your beautiful, perfect child who you grew and love with every cell of your being, now and forever more. You want to talk about them, how proud you are of them, irrespective of the time you spent with them. This reticence from other people may lead to resentment.

It may lead to a feeling of isolation. A feeling that it may, as a consequence, be better to avoid certain people, certain places, certain situations not because you want to, but because you need to protect yourself from further hurt.

The knowledge that you are now ‘different’.

That is enough negativity for now. As I said, you will see the worst in people – and the best, too. The kindness of people can know no bounds. Compassion, empathy, the compulsion to reach out and help – the help you need, not what they think you need.

Those who will sit with you as you cry, as the cascade of tears fall, holding your hand and passing endless amounts of tissues..

And those people can often come from places you least expect; relationships can take on a new depth, friendships and acquaintances can be strengthened, new friendships forged often with strangers with whom you may now share a common experience.

Those who share the common experience, those who ‘get it’ are invaluable. It often does not matter if you have never met them, it does not matter if their child died in circumstances that are completely different – they understand. You may find you have a certain shorthand with them, and not having to explain is liberating.

You may feel the value of liberation: grief is exhausting. It seeps in to your pores, into your bones. The simplest of tasks can seem challenging; your memory unreliable, turning even the smallest thing that makes your life a tiny bit easier into a precious gem.

You may feel like you will never be happy again, never smile again. Indeed you may feel like you do not want to be happy again, nor smile again – or that you deserve to.

The feeling of guilt can feel all-encompassing. The knowledge that rationally, you know you have no reason to feel guilty – that you did everything you could, and would have done more, if only, what if – is irrelevant.

I still feel like I failed my child. I did not keep him safe. Even though I know, rationally, if he had not been born when he was we both would have died.

Emotional torment.

And the anger – oh, the anger. So raw, so visceral. Anger at the world in general, at the hand life has dealt you, at the world being so bloody unfair. Anger at those who embellish and become melodramatic over trivial everyday annoyances (no, spilling your coffee is not the worst thing ever.)

Anger at those who seem not to appreciate their children, take them for granted. But in the same breath, thinking you are glad that other people are blissfully unaware of such heartbreak.

More than a year on after Hugo died, I have learned to feel happy again. It is a different sort of happiness than before. A happiness borne out of different priorities and perspectives.

But that does not mean that I am better, or that my life is better. No, not by a long shot. I still get bad, low, devastating days as a result of a trigger, or of nothing at all. Those days can make me feel like I am back to the beginning, back to the darkest days, all my progress out of the window.

I have to remind myself I am not back at the beginning, that it is the fault of the path of grief. Grief does not progress in a straight, orderly line. It is a mass of intertwined squiggles that make no sense, with no end.

And that is part of the reality. Grief has no end. There is no better, only different.

You may discover within you a strength you wish had lain forever dormant. That strength comes from intense love, intense pain, and it can take on the world.

I am not going to tell you what to do, how to grieve. I cannot do those things, because while we may share a similar experience in common our individual journeys are so very personal.

But I would like to share with you a few points that have worked for me, take them or leave them as you will:

One day at a time.

Don’t expect too much of yourself.

Whatever is right for you, whenever is right for you.

Find people you can trust to confide in, or just to listen.

Be open and honest with your partner about your feelings, no matter how much it may cause extra tears – you need to be honest so you can support each other.

Find a way to express your grief – whether that is drawing, writing (on a blog or in a private journal), talking to someone, raising money for a charity.

Try to be gentle to yourself, and take time for self-care. Grief is exhausting, meaning you need to find ways to recharge your batteries.

Take time for your grief – ignoring it does not make it go away (as I discovered to my cost).

Being selfish when you need to be is acceptable – often life after loss is about personal survival.

There will be days when just getting out of bed is an achievement – and there will be days where you feel you can take on the world.

Bad days can come from nowhere.

You are not a bad person. You deserve love and happiness, even if it may take time to return, take a different form and be fleeting.

Like this:

These terms sound pretty similar, but they are different, very different – and the distinction in respect to living with grief is crucial.

‘Moving on’ implies putting something behind you, letting something go. The effort of trying to move on from a relationship that has ended, especially one that has ended acrimoniously.

It seems that ‘moving on’ has positive connotations. Moving on means you are being strong, courageous, putting the negative stuff behind you and facing the future with a positive outlook and a bright smile.

Many bereaved become frustrated with the notion that we should ‘move on’. Observations such as in this recent published research bearing the headline that “two years, one month and four days is the time it takes to feel better following bereavement” is incredibly unhelpful, implying that there is some kind of time limit on grief.

And what does ‘better’ mean, anyway?

That you’re better than you were in the raw early days? As in better able to function as a human being once the shock has worn off.

That your behaviour is ‘better’ – or more favourable – than the earlier days? This is often more about others wanting to be able to take away your pain – well meant but futile – as well as about other people’s discomfort with responding to your pain. Grief can make the bereaved rather ill-tempered and unreliable for various reasons. We don’t like that behaviour either but we have little choice but to find a way to live with it.

That you’re ok now? Life carrying on as normal. Phew, that’s over, as you were!

‘Better’ is such a subjective term, grief such a personal journey that is different for everyone its use in such an article is pointless.

(The article is actually more helpful than the headline implies, arguing the case for more bereavement support and for people in general to feel more comfortable talking about death, but which do people remember more? The hyperbolic headline, or the boring old facts in the article?)

Perceived time limits on grief can lead to comments such as “Ooh, she never got over the loss of [child, spouse, parent etc]”.

Well, the truth is you don’t. Perhaps some people might be better at hiding their pain, and sorrow. They might put it away in a little box inside their mind, but just because it is not talked about, it does not mean it has gone away.

I love this quote from the wonderful Megan Devine of Refuge in Grief. She organises the invaluable Writing Your Grief course I did a few months ago. She hits the nail right on the head.

‘Moving on’ from losing Hugo has never been my goal. Hugo is my child. I loved him for every second of his life, and I shall love him for every remaining second of my life.

There is no moving on from that.

For the first few months, my priority was survival. There were times when I felt even simple survival was beyond my grasp, such was the pain that I feared would never, ever end.

I wanted to find a way to move forward with my life. To incorporate Hugo in to my every day life in spirit, as I would have incorporated Hugo in to my life as the mother of a living baby.

It is why I work so hard on Hugo’s legacy. I am connected to him every moment of every day, I know, whether or not Hugo’s legacy exists.

I do not need to prove my love for Hugo, but making a difference for others is my way of carrying my love for him.

It gives his life and mine meaning.

Gradually, I have learnt to feel less guilty about feeling happy, or doing something just for me. A smile on my face does not mean I feel ‘better’. I am all too aware that a bad day or a trigger is always just around the corner, and I have an armoury of self-care tactics to try and manage them.

The top row of jars on the top represents the popular view that over time, grief shrinks, becomes less overwhelming, takes up less space in our lives.

The bottom row shows the reality: that grief stays more or less the same over time. The shape of grief – the way it looks from the outside – may change a bit, but ultimately it’s the same size. Grief remains the same even as our world after bereavement grows larger.

To sum up, the diagram is a brilliant visual way of demonstrating that we don’t ‘get over’ or ‘move on’ from the loss of a loved one. Instead, we find a way of carrying the loss with us, living with our grief, dealing with our triggers – of moving forward with our lives.

‘Moving forward’ is a phrase I prefer to ‘new normal’. What is ‘normal’ anyway? Life evolves, ebbs, flows. It is not that you move from one ‘normal’ to another ‘normal’ and stay there.

‘Moving forward’ requires resilience. Resilience is the understanding (learnt the hard way) that life will not always go your way, that crappy stuff will happen to you and to the ones you love, but finding ways to not let it keep you down. Finding ways to keep you moving forward.

Like this:

At the end of 2014, Leigh reflected on the events of that year. She acknowledged that she had survived the worst thing imaginable – the death of her much-wanted, much-loved son, Hugo.

You recognised that 2014 had shown you that the unexpected can happen, your dreams can be ripped to shreds. You surmised that while we can never know what is around the corner, we can still plan, prepare, and dream.

To that end, you identified three main goals:

To continue to grow Hugo’s Legacy;

To maintain your physical health;

To improve your emotional health.

You summed up your aspiration for 2015 using a quote by Maya Angelou: “…to not merely survive, but thrive; and to do so with some passion, some compassion, some humour and some style.”

Leigh articulated rough plans around continuing her passion for Hugo’s Legacy (which encompasses compassion); to expand on her writing; to allow herself to indulge in her humorous and stylish sides – the things that make her, her.

Performance

Leigh has difficulty acknowledging her own progress and success. A large part of this is that she, of course, wishes that she still had Hugo in her arms; that she had nothing to campaign for.

However, she must recognise that six months after setting her year-long goal she is doing very well indeed.

Some highlights include:

Hugo’s Legacy is growing bigger all the time. #HugosLegacy trended on Hugo’s first birthday, and clinicians have remarked how Hugo’s story has prompted them to reflect on their own practice, for example. Leigh is consequently increasingly recognised as a leading parent voice in neonatal and bereavement care.

Leigh has maintained her physical health by regular exercise at the gym, and running and walking. However this has slipped in the last month or so since the closure of her gym and a return to work.

Leigh’s emotional health has seen a marked improvement since December, thanks to intense psychotherapy sessions. These sessions helped reassure her, in her own words, “that I am not bonkers”, that the intense feelings she has experienced are natural responses to the events of 2014; to acknowledge that grief is forever meaning it needs to be faced however difficult that is, in order to find a way to live with it. At the beginning of June, Leigh felt as ready as she ever would be to return to work. This was a big step, and one that Leigh should be proud of.

Leigh has expanded her writing – achieving an ambition of becoming a Huffington Post writer, as well as being a finalist and on the shortlist of major national blogging awards.

She has published posts showing her lighter side, and about her love of style reflecting that while the events of 2014 may have changed her irrevocably, there are things she can return to that help her realise life is worthwhile.

Conclusion and recommendations

Leigh is indeed not just surviving, but thriving, with compassion, passion, humour and style.

She needs to make sure she continues to care for herself. Wanting to change the world is noble, but she must also remember to rest when her mind and body tells her to do so – burning out will help no one. Scheduling regular self-care time (including physical exercise) is vital towards maintaining her significant emotional and psychological progress.

That said, Leigh must remember that irrespective of how much progress is made, there is no cure for grief. Bad days will still haunt her, and as gruelling as they are they must be endured. She must remember that it is acceptable to hide under the duvet sometimes. She must never forget that living with grief and trauma is exhausting, meaning that self-care time is non-negotiable.

Leigh should be very proud of her progress so far in 2015. Bearing in mind the points above about self-care and balance, she should continue to thrive for the rest of 2015 and beyond.

Like this:

Because losing someone you love is difficult enough, living without someone you love is heartbreaking enough, living day by day is exhausting enough without the added frustrations and torments contributed by those who exclude and patronise those living with grief.

The patronising comments and exclusion are usually unintended, I know. That knowledge does not make the sting any less, though.

In the 15 months since Hugo died I have been told I am a ‘conversation stopper’; been told ‘God will give me another baby’; seen the fleeting moment of terror in a stranger’s eyes when I have told them about my son.

I have been aware that people have trodden on eggshells around me. Sometimes those eggshells have been scattered because people haven’t known how to approach me (which I kind of understand, but life hasn’t exactly been easy for me either).

More often, those eggshells have mounted up because death, grief, bereavement is put in to the ‘too difficult’ pile.

You see, in our culture we are scared of death, of grief, of bereavement. That means that so many of us don’t know how to speak to those who have suffered a loss.

Before Hugo died, I was one of those people. Wanting to be kind, compassionate, empathetic but not wanting to say the wrong thing. I cringe when I think back to talking to bereaved people before losing Hugo; I can remember tripping over my words, saying I’m really sorry for their loss.

No one is perfect. We can all make faux pas, we can all blunder and put our foot in it. This isn’t about berating people for trying yet not quite getting it right.

This is about reconsidering how we engage with the bereaved – as individuals and as organisations.

It’s vital to say that many people – family, friends, and strangers alike – have been absolutely incredible in their support and making sure we know that Hugo will never be forgotten.

That said, many negative experiences compounded my heartbreak, and led me to be something of a hermit for several months because life in the sanctuary of my home was easier to control.

I have been upset and disappointed when Christmas cards omitted Hugo’s name, and his birthday forgotten by people who were unsure of what to do for the best (clue: ask).

I was frustrated to learn that bereaved parents are excluded from the Picker Neonatal Survey. Perhaps that is from a point of view of being sensitive – but it is patronising. As described in this post, a significant portion of views is therefore missing from the results, so how can services know what they do well, and what needs to be improved for bereaved parents?

I wrote a couple of weeks ago about how I was told because I had recent experience of birth trauma it is ‘almost impossible’ to have a balanced discussion (this also applies to loss).

As part of my #MatExp action for June I encourage everyone to #saytheirname as a way of helping people overcome their reluctance to talk to bereaved parents about their baby. The idea behind that is that parents can then talk as much or as little about their baby as they wish.

The point is to put the ball in the parents’ court. Put your own momentary discomfort to one side for a moment. Let the parent make the decision to talk or not talk about their baby for themselves.

Me and Hugo

Earlier today a national organisation I had applied for an unpaid role at told me I had not been shortlisted. There were two reasons: the first was a lack of experience at the required level of seniority – fair enough. The second reason made me feel very cross indeed: the panel felt there had not been enough time since Hugo’s death, and I was ‘not ready’. They prefer for parents to wait at least two years, as part of their duty of care.

A duty of care is important, of course. Of course it is, especially when dealing with sensitive issues as this was.

The trouble with such a policy is that it forgets people are individual. It forgets that grief ebbs and flows over time, meaning judging a bereaved person’s time since their loss is impossible.

To broadly generalise, grief does change over time. It doesn’t get ‘better’, it gets ‘different’. That means that as time goes on, there are more days that I feel better able to cope, having developed my own coping mechanisms. But it never goes away. Ever. There are days when I wake up feeling like all the progress I have made has gone. Times when I feel so, so tired from the weight of grief, and knowing that this is forever.

We need to remember that grief can be like floating along in an ocean. Sometimes it is placid, sometimes it is a tempest. We need to remember life in general can be like that, too. We none of us know what tomorrow, next week, or next month will bring us.

We need to be able to ask open questions, listen to the responses, and take account of individuals’ situations.

We need to remember that there is no right or wrong way to grieve, no time limit on grief, and that everyone’s journey is personal.

My heart is irrevocably broken. But I get up. I am strong, I am a fighter. I campaign in Hugo’s memory.

I have used the pain of my experiences and put it towards positive, constructive use. I have not become bitter and angry – but with such frustrations, assumptions and being patronised in the way I can see how it could be possible to become bitter and angry.

People who are bereaved often get on with things. We have little alternative choice. Sometimes, we have need a bit of extra care and consideration (on a low day, or anniversary, say). But you know what? That makes us no different to any other human being.

We should treat everyone with kindness, empathy, compassion and respect. We should respect everyone’s individuality. We should understand that life happens. Death happens. That life is a part of death.

Perhaps if we did that there would be no need tread on eggshells, or reminding people to #saytheirname.

And by not having to constantly fight to feel heard, or worry about other people’s feelings bereaved people would have one less weight off their mind, one less thing to tire them out.

Like this:

Sunday morning seems to be a good time for resonant posts to be shared on Facebook; posts that prompt lots of thought and make me a bit emotional.

Last week was the video of Alison Cameron’s speech, and today it was this post about post-traumatic growth (PTG). To quote the article, PTG is “the phenomenon of people becoming stronger and creating a more meaningful life in the wake of staggering tragedy or trauma. They don’t just bounce back—that would be resilience—in significant ways, they bounce higher than they ever did before.”

This was the part that made me especially emotional:

The term PTG was coined in 1995 by Richard Tedeschi, Ph.D., and Lawrence Calhoun, Ph.D., psychologists at the University of North Carolina, Charlotte. “We’d been working with bereaved parents for about a decade,” Richard says. “They’d been through the most shattering kind of loss imaginable. I observed how much they helped each other, how compassionate they were toward other parents who had lost children, how in the midst of their own grief they often wanted to do something about changing the circumstances that had led to their child’s death to prevent other families from suffering the kind of loss they were experiencing. These were remarkable and grounded people who were clear about their priorities in life.”

None of these parents, Richard stresses, believed that their child’s death was a good thing. They would have given up all their newfound activism, insights and altruism, their re-ordered sense of what really matters in life, to have their child back. “The process of growth does not eliminate the pain of loss and tragedy,” Lawrence says. “We don’t use words like healing, recovery or closure.” But out of loss there is often gain, he says. And in ways that can be deeply profound, a staggering crisis can often change people for the better.

Unlike the parents described in the article, nothing could have been done to have prevented Hugo’s death. However, as I have said numerous times, there is no ranking system. I might not be able to prevent other families suffering the same kind of loss (while I have been working to raise awareness of preeclampsia and HELLP syndrome, they are both thankfully very rare), but I can help prevent other families suffering the kind of additional, avoidable pain and distress mine experienced because of a lack of appropriate support.

I love that the quote states they don’t use words like ‘healing, recovery, or closure’. In my view – and shared by many other bereaved parents – that these things are not possible.

We know that nothing will or can bring our children back. Things may, over time feel ‘better’ but they will never ‘be better’. We may seem to have ‘recovered’ outwardly, but the grief is always lurking beneath the surface, ready to re-emerge without warning. There is no such thing as ‘closure’ – Hugo will always be missing from my life, I shall always love him and miss him with all my heart.

Nothing can ever replace him. I too would give up all my insights and altruism to have him back in my arms. No hesitation. In a heartbeat.

That is why comments such as I described in this post are so very hurtful. That comment is just a representative example. It demonstrates how we need to look differently at grief, trauma, and how we (the wider ‘we’ – culture and society) work with those who have experienced grief and trauma and work together constructively, collaborating and learning from each other to make a positive impact on the world.

I will leave the final word with this powerful quote from the article: